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DNA data shared in ways patients may find surprising

DNA data shared in ways patients may find surprising
Tuesday, August 13, 2019
Deals between drugmakers and hospital systems to mine the genetic profiles of hospital patients are triggering concerns over the control of valuable genetic data. Drugmakers have been spending hundreds of millions of dollars for access to patient information because of the data’s potential to help unlock disease insights and discover new drugs. They are striking deals to sequence...
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Hostess with the Mostest

Tuesday, March 20, 2012
If you know anything about Liz Veronda, you know she throws a great party – like, for instance, there was that retro- ’70s birthday bash she put together for her husband a few years back, complete with a mirror ball, sand art, Farrah...
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“Life: A Breath Away”

Tuesday, March 20, 2012
Helen “Cathy” Gould was diagnosed with Alpha-1 in 1999 after her health declined so rapidly that she was forced to retire.  As she began weekly IV injections, Gould decided to become an Alpha-1 Support Group leader, hoping to...
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Feathers by the Million

Tuesday, March 20, 2012
The poet Emily Dickinson called hope “the thing with feathers that perches on the soul,” and Leopoldo Fernández Pujals and his wife, Marilina, know all about “the thing” with feathers. Their son Andres was diagnosed...
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The Day that Alpha 1

Tuesday, March 20, 2012
A poem written by Lila M Thomason, in memory of her brother, Leon. When they made my brother Leon, they threw away the mold Too short a life he lived Too short our story told About an eight year race That ended at 42 years old.  He...
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Singing lifts Margery’s spirits

Tuesday, March 20, 2012
Margery Eriksson of Berkeley, California won’t let Alpha-1 lung disease stop her from doing what she loves most – singing. The retired elementary school teacher has been singing for the past 21 years with the Oakland Symphony Chorus....
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Live life to the fullest: Advice from Mary, who does it every day!

Tuesday, March 20, 2012
Mary Pierce is the definition of an athlete: she’s a kayaker and a bicyclist, she lifts weights regularly, she rides her motorcycle and she works full time. And yes, in her spare time, she’s learning to fly a powered paraglider. For...
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Former Baywatch star, mother, fashion designer and Alpha

Tuesday, March 20, 2012
Melissa Biggs looks like a model – tall, blonde and athletic – or, at least looking at her, you might think she’s somebody you saw in a movie or on television. In fact, she’s all of those things. She plays in a tennis...
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The life of Vicki Joseph remembered: Memorial booklets are still available celebrating her life "in her own words"

Tuesday, March 20, 2012
  Victoria “Vicki” Joseph’s budding career as a playwright and novelist was cut short when she died of chronic rejection of her transplanted lungs on Aug. 2, 2009. Joseph had been a librarian, a criminal defense attorney...
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Trine: Who says you need 14 pills a day after transplant?

Tuesday, March 20, 2012
Trine Engebretsen was being treated in the twelfth hospital to admit her in her short life – she was dying of Alpha- 1 liver disease, and she was only two years old. Her pediatrician told her parents that she was failing quickly. The...
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Colorado Eagle Scout project encourages Alpha-1 awareness

Tuesday, March 20, 2012
Taylor Fittje wants to become an Eagle Scout, and so to reach that rank, he designed a community service project around Alpha-1 awareness. Fittje, of Parker, Colorado, was inspired by his grandfather, Bob Fittje, 63, an Alpha who lives in...
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For Sue Binnall, volunteering became a way of life

Tuesday, March 20, 2012
Susan Binnall is a wife, a mother and a grandmother at home, but in the Alpha-1 community she’s nothing short of a hero. Binnall, of Newton, MA, was a maintenance worker for United Parcel Service, monitoring the perimeter of the building...
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Angel without Wings

Tuesday, March 20, 2012
Skylar Haynes simply loves to fish – she likes it better than playing with Barbies, better than painting pictures, better than dancing – and if you get to know her even a little bit, and you begin to see why. Fishing requires...
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